Patient Experience and Caregiver Involvement in COVID-19 Care Pathways: Revealing System Blind Spots Through a...

Background/Objectives: Patient experience is increasingly recognised as a key dimension of healthcare quality, yet most tools fail to capture its temporal and processual nature, limiting its contribution to system improvement. This study aimed to demonstrate how a biographical approach to patient experience can generate actionable insights for improving care pathways. Specifically, we sought to: (i) identify and characterise distinct types of prehospital care pathways among patients hospitalised for COVID-19; (ii) identify patient-perceived significant events and safety issues; and (iii) generate structured variables to inform a subsequent quantitative phase. Methods: We conducted semi-structured biographical interviews with 31 patients hospitalised for COVID-19 in two French university hospitals. Data were collected using a life-events calendar (LEC), enabling day-by-day reconstruction of symptoms, healthcare contacts, and decision-making processes. Thematic analysis was performed with multidisciplinary triangulation. The qualitative phase identified three pathway types and the key mechanisms underlying each; these patterns were subsequently confirmed in a separate quantitative follow-up study (n = 312) using state sequence analysis. Results: Three distinct pathway types emerged: short (≤3 days), intermediate (4-9 days), and long (≥10 days). Delayed pathways were associated with repeated false-negative tests, underestimation of severity, and silent hypoxaemia. Across all pathways, patient experience suggested critical system-level failures, including diagnostic delays and inadequate escalation of care. Notably, in many cases, hospitalisation was triggered by a relative rather than a healthcare professional. These findings highlight the role of patient and social context as key components of care pathways. Conclusions: When captured longitudinally, patient experience may provide actionable insights into healthcare system functioning, suggesting structural mismatches between clinical trajectories and care responses. The life-events calendar method offers a replicable framework for transforming patient experience data into clinically and organisationally relevant knowledge. Integrating such approaches into healthcare evaluation could enhance patient safety, improve care coordination, and support more responsive care systems beyond COVID-19.